Today is 1000 Voices for Compassion, where bloggers, writers, artists, or anyone, have been asked to create something on the subject of compassion. You will be able to see all the amazing content being released on the 1000 Voices blog or on twitter using the hashtag #1000Speaks.

The subject I have chosen to talk about is one that many people with chronic illness find difficult in some way, and that’s self-compassion.

Living with a disability can be really difficult for a whole myriad of reasons, but in truth, we are often the hardest on ourselves.

I frequently find there is a specific personality type amongst people living with painful and exhausting conditions. It’s ironically the opposite of the image pushed by the media of lazy, feckless people who can’t be bothered to do a day’s work. They are hard-working, creative people who push themselves to the limit. People who struggle to say no, to others, and to ourselves.

Saying no to myself is definitely something I struggle with personally, and so I have been working on trying to recognise the achievements I do make in a day, even if it’s something simple. Such as taking a shower when I felt like death. Or responding to an email. Anything I was able to do, no matter how I felt.

A few months ago I was at an Ehlers-Danlos Syndrome support group, and this topic came up. We were talking about achievements, and I shared my new mindset of trying to feel good about the little things, even if I only got a fraction of what I wanted to achieve done.

Then another lady spoke up and suggested I was looking at it in the wrong way. That I was still putting that level of achievement on doing something. She said to turn it around and say:

‘My achievement today was doing nothing, because that is what my body needed.’

The days of being stuck in bed, or lying on a sofa are the hardest. Every cell in my body is rallying against it – telling me I need to be doing something. At my harshest I feel worthless if I’ve done nothing. But we have to listen to our bodies, and have to rest in order to function at other times. To continue to fight against it is to battle against ourselves and what we need physically. It just leads to more pain, and more fatigue – and more feelings of worthlessness as we putting the pressure on ourselves to perform. No one else.

It was quite the lightbulb moment for me, and made me realise she was right, it was a much healthier way of looking at it.

It’s often easier to step back from the situation and think what you’d tell someone else in the same position. If your friend told you she’d had a terrible day health-wise, and they felt like a useless piece of crap because they’d spent the day in bed, would you agree with her? Or would you empathise with their feelings, but point out they did the right thing by not fighting against how they felt, so they could rest up and hopefully have a better day soon. And that some days (or a lot of days!) spent sleeping, or reading, or on Facebook is absolutely fine, and doesn’t negate their worth in society?

Self-compassion is a crucial aspect of living with daily pain. I can think of so many people full of compassion for others who find it hard to turn it back on themselves. We need to become our own advocate – both to others, and to ourselves.

How do you use compassion or self-compassion in your life? All comments appreciated!

Lipstick to Walking Stick – Can you have both?

Karolyn Gehrig, like myself, has Ehlers-Danlos Syndrome. It’s a genetic condition that’s caused by a fault in the connective tissue – the stuff that basically holds us together. While the condition has various types, there are some symptoms that are common across the Ehlers-Danlos spectrum. It’s usually incredibly painful, exhausting, and impacts every part of the body from the joints to the organs. And there’s no cure. Many of us spend endless time in and out of hospital.

Last April Karolyn tweeted some selfies. Her and everyone else, right? But her photos are very different to the usual backgrounds of partying and having fun with friends. She’s framed by treatment rooms, face masks and the wires attached to her body. She’s sporting her silver ring splints (worn to reduce joint dislocations) and uses her walking stick as a prop. My favourite is her skin-tight dress that’s covered in pills. She tags these selfies as #hospitalglam, and they certainly are.

Since Karolyn’s tweets many others have joined in; posting selfies in waiting rooms, after operations or of a high heel peeking out of a hospital gown.

So why has this resonated for those of us with disabilities?

Having a chronic illness can be scary, and all-consuming. You can feel like you’ve lost control when your body won’t do what you ask. Decisions are constantly taken out of your hands – about your mobility, ability to work, social life and relationships. And at the centre of that loss is the medical world. Most people don’t get to choose their consultants, their treatment plan or their medication. Even if you have a great doctor you are constrained by budgets, research, and availability of treatments.

In the midst of all this other decisions get wrested from you too – your hair, your clothes and your accessories. Funky handbags are swapped for practical ones that stay put when you’re using a walking stick or crutches. A favourite necklace has to be removed because it tangles with wires. You pick new clothes based not on the designer, or because you love the colour, but by comfort so as to reduce chronic pain flare ups. Smart shirts get thrown out because buttons were designed by the devil, or t-shirts discarded because you can’t lift your arms up. I was never a fashionista, but I’ve lost count of the items I’ve thrown out that simply no longer fit into my world.

And if we do dare to put on make-up and nice clothes and do our hair we are often misjudged – “she can’t be that unwell”, we hear, sometimes silently, sometimes not. This feeling creeps into the NHS too. I know of many people who won’t wear make-up when discussing pain relief with a doctor because they think they won’t be taken as seriously.

The Department of Work and Pensions openly judges appearance during benefit assessments. They ask assessors to make notes on “the claimant’s appearance, manner, hearing ability, walking ability,” and they will frequently use this ‘informal observations’ section to make comments on clothing, make-up and hair. A comment on my own form actually stated: “Wearing brightly coloured clothes which shows no outward sign of depression”. I was wearing baggy yoga clothing because anything tight was painful, and the assessor made a totally inaccurate correlation between the colour of my t-shirt and my health.

Similarly, I often wear my hair in a ponytail because it reduces my neck pain. On my medical form that hairstyle seemed to equate to an ability to lift my arms, but I wasn’t asked if someone else had done it, which they had. Due to notes like these made by the assessor, my Disability Living Allowance claim was turned down twice. The two tribunal cases that followed were horrific. I was cross-examined and treated like a criminal.

These experiences have enormous ramifications for so many people trying their best to navigate the system. The wait for a tribunal can last between six months to a year, and causes immense stress.

When you have an invisible condition, you can face an additional level of scrutiny and are often having to work much harder to prove how ill you feel. So it’s not surprising that sometimes I feel like I’m losing myself. Already, my world centres on ill health – doctors’ appointments, hospital stays and physiotherapy. But I’m still a person under the hospital gown. I still like my nails to be brightly coloured even when my hands are covered in bruises from a cannula, or welts from a blood pressure machine.

#hospitalglam is about taking back that control and saying you can wear what you want to, and it doesn’t represent how you feel. While disabled people are already there, society and the medical establishment lag behind – often still expecting one specific look from a person deemed chronically ill.

I love to hear from you! Please comment below with your thoughts. Have you ever been judged by your appearance?

Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome.

I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences. However he immediately put me at ease, and was a nice, approachable person.

I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try.

He said in terms of exercise I was doing everything right, and everything I could. This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks. I told him what one Pain Consultant had said – that I should be exercising six times a day. He said it was such an easy thing to say, and proved how little he knows.

We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good.

At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP). I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future – to survive. I never know how people may react to something like that, due all the ‘scroungers’ rhetoric in the media, that has been picked up by so many.

Since I received my diagnosis letter in 2011 – I haven’t had a decent letter from a consultant that I could use as medical evidence. I’ve seen lots of consultants, but letters are generally of the “Treatment x didn’t work, been discharged” variety which won’t help much in terms of summarising where I’m currently at on the whole. I feared the lack of letters may go against me, as the Department of Work and Pensions will argue I can’t be that bad if I don’t see a consultant regularly.

Dr Hakim was very understanding of this, and we spoke at length about the PIP changeover, and he knew how hard it was on his patients. He said it’s obvious the reason I don’t have new evidence is because I’m doing the best I can at home to manage, but he would write an updated version for me to keep on file for when I need this.

This will take a huge worry away from me, so I’m thrilled.

He recommended that I take a multivitamin daily – he mentioned the Well Woman one, to make sure I’m topping up on anything that could be contributing to my levels of fatigue. He’s also going to ask my GP to check every blood test has been done, including the T3 Thyroid test that the NHS often miss out. He also suggested getting some Melatonin from the US, as well as suggesting some other sleep and pain medications I have yet to try that he’s going to suggest to my GP to look into (I can’t remember the name of them currently!) He also recommended some consultations in other fields that I could see if I continue to get nowhere locally.

He also suggested that anyone with POTs or autonomic dysfunction (including sleep problems) to drink an Isotonic drink called Nuun. He explained that they tell people like us to keep hydrated, so we drink water – but it actually make things worse as it dilutes the salt in our blood, so our kidneys then filter it and we pass it out with urine leaving things actually worse. (Or something like that!)

So he suggested drinking a salt isotonic drink which means that we are really hydrated, as drinking liquid with a similar salt content as our blood means it will do its job, rather than being filtered and disposed of straight away. Most of the similar products on the market i.e. sports drinks, Lucozade, etc are full of crap and sugar, so he suggests Nuun as it doesn’t add much else, just some flavouring. He suggested at a minimum to drink one before bed, and one as soon as you wake up, and this should stabilise some of those issues.

They are pretty expensive, but we only need half a tablet at a time, as the whole tablets are designed for athletes.

We also spoke about Prolotherapy, which is a new therapy I’m hearing a lot about recently, mostly from Americans, and I was interested in his thoughts. He said there was no evidence for it, and some of his patients had been made worse by it.

I found Dr Hakim very understanding, kind and obviously knowledgeable. All in all it was a great appointment – and when his letter arrives I will add anything helpful I’ve forgotten!

Professor Grahame retired from NHS patients some time ago, and is no longer taking on new private patients. I believe he may still have a private clinic for under 16s, but Dr Hakim is a perfect alternative.

First of all sincere apologies for the lack of updates lately. It’s been such a busy time, that writing has fallen by the way-side a little.

I just thought I’d give you a small update about what I’ve been up to lately.

I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant. I’ve had that in place a couple of months now, and it’s been brilliant. She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc. It’s taken quite a bit of stress out of my life and I’d recommend it to anyone.

Medically I’m still very much in no-man’s land. The Pain Clinic have declared me incurable and untreatable, and discharged me. Apparently they only help people who will get better, they’re not interested in actually managing pain. My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less. It’s quite a scary place to be.

My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website. He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.” Although he did refer me to a Hypermobility Specialist Physiotherapist instead. Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward. Instead without any examination she declared there was nothing she could do, so I’d have my final batch of Hydrotherapy and that would be it. She then spent the rest of the session basically telling me I should be perfectly okay in the mornings, as other people with the condition manage. I tried to explain I have severe insomnia and sleep issues, and am a total mess in the mornings, but she wasn’t interested.

I then finished my final block of Hydrotherapy, which I really enjoyed. I do find the warmth means I can do much more than out of water. I would love this on a rolling-basis, and will keep trying to pester the hospital to make this happen.

I’ve also just had a sleep study done, but I’m waiting for the results. It was a machine I had to take home, that strapped to my stomach and chest, a tube went up the nose (nice!), a mask for your mouth and finally a clip for your finger. They have to rule out Sleep Apnoea before they’ll send you to a sleep consultant, but I am a little worried they’ll tell me it’s not Sleep Apnoea, and then not let me see anyone at all. Hopefully I’ll get the results soon, and this long-term issue is explored.

I have been lucky enough to find a private physiotherapist, however, that has an interest in Ehlers-Danlos Syndrome – and he genuinely does. It’s a lot of money, but the only treatment I’m now getting. He hasn’t promised he will be able to help me, but he’s going to try. If I can even maintain what little mobility I have, that would be a start. I’m diligently doing all the exercises he’s giving me (not a hurriedly printed out sheet, but thoughtfully targeting specific issues) and he’s easy to contact if things go wrong to provide advice, and alternative exercises. He really seems to know his stuff, so that’s been great.

I also recently took part in a study on Ehlers-Danlos Syndrome that’s all about what triggers the condition in the first place (obviously it’s genetic, but there is often an occurrence in your life that makes it much worse, often puberty, having children, an accident or something else. Others just have it severely from birth, so it’s exploring all of that.) The research also looks at flare-ups and the triggers.

The research sounds really interesting, and when it’s published it will obviously go into medical journals, but particularly GP and physiotherapist journals, to catch front-line staff.

One thing I truly believe is that the fight for decent rates of diagnosis lays almost entirely with GPs and Physiotherapists. They’re the ones that have to see signs, and see past one problem joint, or a history of chronic pain without a solid diagnosis and make a referral to a specialist. Once they have that awareness, only then can diagnosis rates climb.

I’m also preparing for Christmas, and this year have decided to have my first ever real Christmas Tree! I’ve also been making festive bunting with the help from my Personal Assistant, and it’s the first year in a really long time I’ve been genuinely excited for Christmas!

My mum is currently having physiotherapy after an operation on her shoulder. She got chatting to her physiotherapist, and my condition came up – Ehlers-Danlos Syndrome. It turned out that the physiotherapist has a great interest in the condition, has a few patients with it, and leads the in-house training to the other physiotherapists. She invited me to come along to give a talk to them during that session.

So that’s how I ended up pretty much taking over the whole training session myself.

The idea originally was that the physiotherapist would cover the medical and exercise aspects, and I would cover the daily living aspects – but my notes grew longer and longer. This was my chance to help make things better for people with the condition, and there was so much to say!

When you speak to someone with EDS, or other complex chronic conditions you’ll often find that they have had a bad history with a physiotherapist at least once in their past, and sometimes repeatedly. (Here are just two posts talking about previous experiences here and here.) But sometimes it’s not their fault – we are well aware they have to see a lot of people in not a lot of time, and are generally encouraged to discharge as soon as possible. Many report being asked to pick one joint that is the worst, being handed a couple of exercise sheets and that being the extent of their treatment. Others, including myself, saw physiotherapists for years without them ever mentioning the hypermobility – that could have led me to that crucial diagnosis.

While I had a lot I want to say myself, I wanted to let other people with the condition have a say as well.

So I went on to a Facebook group that has over 5000 people with the condition on and asked them what they would like to say to physiotherapists if they could. From that, adding in information about our symptoms, our daily lives, the different types and so on, I built up a talk.

The way their training sessions work is that they have an hour built into the day, and all the physiotherapists who don’t have a patient at that time, come along. She expected around 4 to 5 to attend – but when I arrived I was faced with a very small office filled with around 10 physiotherapists. It wasn’t so long ago I would have immediately turned my chair around, found a toilet and locked myself in it until they all went away, but I’m very lucky that over the past few years I’ve been chairing a meeting group and have greatly gained confidence in public speaking – to a certain extent, I’m not saying I’d be happy to give a speech to a large amount of people, let’s not get silly here.

It also helped I was talking about something I was passionate about – the education of front-line medical professionals.

A few of the topics I spoke about included the difference between Ehlers-Danlos Syndrome, Hypermobility Syndrome and Benign Joint Hypermobility Syndrome. A general overview of how many medical professionals and consultants someone with EDS sees before they get a diagnosis, and the fact that it takes 30% of patients over 10 years to receive a diagnosis of EDS and over 20 years to 50% of patients. I also emphasised the fact that 95% of patients remain undiagnosed or misdiagnosed. I also spoke about which conditions are most commonly diagnosed instead of the correct or underlying cause of EDS, and also gave some tips in what not to do when treating or examining someone with the condition. I particularly emphasised that the condition is extremely variable – and that if we can’t come to a session or a few sessions it doesn’t mean we are uninterested, or lazy – just that it’s not what we are able to do at that moment. And it also depends on which areas of our body are a particular problem at the time, one week an exercise might be fine, but the next week dislocate a joint.

I emphasised to them that the way forward is for more frontline professionals to have an understanding of EDS – particularly GPs and physiotherapists who are often the ones patients see first.

No one expects everyone at those two groups to have full knowledge of the condition, when there are so many conditions out there – but it would be brilliant if when presented with a patient with long-term chronic pain, and hypermobility they referred them onto a specialist. Other things that would help patients is long term care, not just the six sessions that are offered on the NHS before being discharged, and the same thing with hydrotherapy, which should be an on-going treatment, particularly as it can be one of the only treatments that is effective for people with EDS.

They seemed interested, engaged with what I was saying, asked questions, and even asked advice on past cases and whether their care was appropriate (whilst maintaining confidentiality of course). One physiotherapist said that in general physiotherapists like regimented care, i.e. they can pick up a file for a patient that says they are currently doing six reps of exercise 1, and 10 of exercise 2, and so on. Any other physiotherapist could then pick up that folder and continue their care if needed. However when he had a previous patient with EDS he found that it was completely impossible to treat him in this way. One week he could do a decent amount, but the next all he could do is lay on a table whilst the physio mobilised his joints for him. Other sessions he couldn’t even make it to the hospital at all. He said that he had to be really flexible with the patient – which emphasised what I was saying.

I also told them about my previous physiotherapy sessions, where I spent the first session explaining how I might not be able to make every session, I was having a lot of flare ups and spending a lot more time in bed unable to do anything and she seemed really understanding. And then it happened, I had to cancel a session and it turned into a few weeks as it was a really bad flare up, and I called to update her and they said just call back when you’re ready, which I did, only to find that she had discharged me.

I was too exhausted to go back to the beginning, so just went without.

Another physio suggested that on occasions like that it would be helpful for the physiotherapist to visit me at home, but of course I’ve never been offered anything like that. Also when talking about ongoing hydrotherapy, which I have been told previously is impossible due to the waiting list – they informed me they do have a few rolling programmes, including one for paediatrics with hypermobility, and another for people with Rheumatoid Arthritis – so it is possible. I’ve now got the name of the manager, and I’m going to contact her and explain how important it is for this to be put into place – particularly when a lot of us are being told that the ‘land based programmes’, as they call them, are inappropriate for us.

Hydrotherapy, for a lot of people with EDS is very good because the water supports the joints, so dislocations are less, the warmth helps with the spasming muscles and we generally find we can do a lot more in the water. Of course this doesn’t apply to everyone, particularly if they have bad POTs alongside, as the heat can cause havoc with feeling faint and dizzy.

In summary I really enjoyed giving this talk, and have been invited back in July.

Patients talking to medical professionals is the way forward t0 them gaining an understanding to the reality of life with a complex condition, without reading a little paragraph in a textbook.

So I commend the physiotherapist that setting this up, and I hope more will do so in the future.

Have you ever has an opportunity to talk to medical staff in this way? What would you have said?